This is the story of our precious daughter, Sara Rose. She was born at 27 weeks. This details our journey as a family through the ups and downs of this situation. She is our 3rd daughter, she has hydrocephalus and now lives with a shunt. She is home now and her older sisters adore her. Here we are, living and depending on the strength and grace of our Father in Heaven.

Thursday, December 22, 2011

Merry Christmas Everyone!

Merry Christmas!! How have you all been? I've been great!

Me and Emma Grace rockin out a tune

My favorite way to smile - all out!

My mom got us out here to take a pic for the Christmas card, I sure wish she would get one she likes

At some point in the day, something is going to be worn on my head, today, a bike basket.

Don't make me ask twice

Shopping for a Christmas tree with Pops and Sisters

My sisters and I have contracted a rare form of chicken pox that only shows up at Christmas time

Hanging out with Grandpa

Come to find out, I need glasses after all. Mom and Dad found some on sale and said I would grow into them.

The real question is - is mom shrinking or will her girls ever stop growing so fast?

Wind, rain, snow, cold, doesn't keep us from playing outside.

Just woke up, got a little bed head going

Let's see, breakfast - check. Church - check. Come home -check. Sit on the ground in church clothes and play with Buddy - check.

My own gingerbread house I'm eating... er, I mean, decorating.

The 6th major food group - Cheetos

We decided to let these hobos make a shelter and live in our front yard. I'm just letting them know who is in charge.

Cookout in the front yard, how do you tell Buddy no when he wants to help you lick the jar of fudge clean. I mean, look at him..

I know for sure before I get this spoon in my mouth mom is going to show up and put the kibosh on this little party

Uh oh, here she comes, gotta go

Camping with some friends at a park

Long day

I love the trampoline, especially when I've got it to myself

Race day

Getting ready

What I do while dad runs the race

Yeah, school. Boy this is fun!

No caption necessary

I love water!!! I love to get wet!! It makes me crazy!!

Eatin a snack with my cuz

Summer Fun

At one time, dad did think this was a good idea

Have you ever heard of ice cream? It's fantastic!

Alright, dad, I'll keep the car running, I want some more of that ice cream stuff. Hurry back

You don't even want to know this side of me sucka...

A few snapshots into the fun times of our life with Sara over the second half of this year. Lot's of good times. She has continue to grow and develop and do great. She takes physical therapy once per month and speech therapy once per week. Her checkups and CT Scans continue to be good. We are getting very close to being 2 years since our last hospital stay. The neurosurgeon said there is enough tubing for the shunt in her abdomen we should not have to worry about a shunt extension for several more years. Our family has a some-what goofy sense of humor, and we want to make her shunt as normal a part of our life as possible. And one of our daughters fell one day and we jokingly asked her if she broke her shunt. Now, that is a regular question when one of them falls. Sara has picked up on it and when she falls she will ask the same thing. Very funny

Sara's speech therapist is very optimistic about her progress and feels as though she will eventually be able to say and pronounce any word she wants. Especially as she gets older and can understand and practice particular exercises. Even though she can be hard to understand, her vocabulary grows each week, her pronunciations improve in tangible ways weekly, and her cognition (ability to think and understand) continue to amaze all of us. She is one sharp chic! Very observant, incredible memory - if you do something once you better be ready to repeat for several days. She will remember very small details about something we have done together and bring them up on her own.

She also has a very strong will and quick temper. Even more than her sisters. Her most hated word to hear from you is "no". Even if you are not really telling her "no", if she thinks your telling her "no" - watch out. Get on the floor and cry, scream, kick, pull hair, let it all hang out at the house, store, church, family, whereever - oh yeah baby, you betcha! How much of that is because of all she has been through compared to being a typical 2 year old? Who knows. But at times it can be trying and at times it can be quite funny. I blame the Cajun side of the family. But that's easy for me, I'm typing.

She is truly a joy and one of our greatest joys is watching her two older sisters with her. After spending 5 months of her first 9 months in the hospital, her mom and I being so protective when she got out, and her developmental delays - her sisters have only really gotten to know her this year. And they genuinely enjoy her. Now, they are big sisters too, they know how to play the system and get her out of their hair when they need her to (Hey Sara, why don't you go find dad and bring this to him), but they also would do whatever it took to protect her and help her through life. It's really cool. We did this thing as a family before thanksgiving of writing what we are thankful for each day for a few weeks and took them out and read them the night before Thanksgiving. And both of them talked about how thankful they are that Sara is alive and with us.

And we are too. We continue to stand in awe and amazement at how God has been so gracious to us. We celebrate as many do this Christmas that God's grace appeared to us. Paul said it well to Titus - But when the goodness and loving kindness of God our Savior appeared, he saved us, not because of works done by us in righteousness, but according to his own mercy, by the washing of regeneration and renewal of the Holy Spirit, whom he poured out on us richly through Jesus Christ our Savior, so that being justified by his grace we might become heirs according to the hope of eternal life. Titus 3:4-7 ESV

And His Grace continues to flow to us each day to sustain our physical and spiritual life. It's such an enjoyable exciting journey we are on through life together. We thank God for family, church family, and friends we get to journey with. And we hope and pray this Christmas you are all well and blessed by God through Jesus Christ with your families on your journeys! Have a great Christmas season and fantabulous New Year!!